Meeting Minutes: 10.4.2016

So I know I tossed quite a bit of information at everyone today, so I will try to be as specific as possible in these minutes. Thank you all for coming out!

I've been doing a bit of research on small fiber neuropathy and retinal nerve fiber layer thinning in FM.  

Here is one of the studies I cited:  http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0161574 for RNFL, check it out!

Basically what this article is saying is that during research scientists found clinically significant evidence of retinal nerve fiber layer thinning in fibromyalgia patients. Which may help practitioners reliably diagnose fibromyalgia by examining the optical nerve for disease. It is also an inexpensive and non-invasive test making it a great option for both fibromyalgia community and practitioners, and because the optical nerve is the first to be affected by this kind of condition it could allow for early stage diagnosis as well. 

In this article they use the term Biologic FM. I'm going to try my best to explain this. In the research they broke down fibromyalgia into three categories based off of Giesecke's classification model of FM. In that model FM is categorized as Biologic FM, depressive FM, and Atypical FM. 

Biologic FM: low depression/anxiety/catastrophizing but high tenderness with some control over pain.

Depressive FM: high depression/anxiety/catastrophizing and high tenderness with little control over pain. 

Atypical FM: moderate depression/anxiety/catastrophizing with low tenderness and moderate control over pain. 

What they also noticed is that in Biologic FM groups there was a more significant thinning of the RNFL and that suggests a nuerodegenerative property to biologic FM (other nuerodegenerative disease include MS, Alzheimer's, Parkinson's ect.) Meaning the nerves aren't just being misinterpreted they are actually dying and degenerating, and THAT is a physical manifestation of disease! BAM!  

So for all those doctors who say FM is not; degenerative, damaging or real, you can officially suck it. Yup. 

But I digress, the important part is that we know there is something wrong and this may be a useful tool and less frustrating process for diagnosing FM early and officially, not to mention a positive avenue for research and understanding FM mechanisms/activation and progression.  

On that note, I have not yet tried to get a diagnosis using this form of imaging (but I will be trying shortly) and I have no idea if doctors are willing to even try this exam. I'll get back to you on that.

On to Small Fiber Neuropathy (basically the same thing just outside the eye) found in at least 50% or in actuality more likely the majority of FM patients. Several years back researchers found a correlation between Fibromyalgia and Small Fiber Neuropathy, but because Neuropathy can be a hard to treat it has been effectively swept under the medical rug. Some of the earliest symptoms of SFN is a burning sensation in hands and feet, swelling in feet, lactic acid feeling in muscles, buzzing, tingling, often people feel itching throughout their body that isn't accompanied by skin traumas. But very rarely is anyone diagnosed with FM actually tested or examined for SFN. Medical EEG and EMG are worthless tests for diagnosing SFN. You need a punch biopsy, ultrasound, a QSART (unlikely) or Psuedo QSART to diagnosis, but can also be diagnosed by a skilled physician with an exam. Some of the most likely specialist to diagnose this are Podiatrists, Neurologist (not likely), Chiropractic Neurologists, and now Ophthalmologists. Medical Physicians will treat these conditions with drugs like: Lyrica, Gabapentin, Nuerontin, and Cymbalta. These drugs may be useful in late stage nerve damage where regeneration is not much of a possibility. However these medications help by changing brain function rather than addressing the underlying cause of the Neuropathy, so not a good treatment for early stages of Neuropathy. 

Here is a shortish and very incomplete list of issues that can cause SFN, but hey it's a start:  

Pre-diabetes and Diabetes

Gluten (not so fun fact: gluten molecules actually mistake the fibers of your gut with nerve fibers and can directly attack nerve fibers)  

Leaky gut or other gut issues like parasites and bacteria or unstable biome

Neurodegenerative disease  

Amyloidosis  

Auto-immunity  

B-12 deficiency (vegan, vegetarian, pernicious anemia, mthfr, sibo, medications...)  

Hypothyroidism  

HepC

Sarcoidosis

Celiac (separate from gluten)  

Peri-neoplastic Syndrome (cancer)  

Chemotherapy

Toxins and heavy metal poisoning  

Lyme Disease

Chemical sensitivity (exposures to herbicides, synthetics, smoke and other toxins) 

HPV Vaccinations (as well as other vaccinations)  

and Flouroquinones (class of antibiotic) like Ciprofloxacin (Cipro)

* Gemifloxacin (Factive)

* Levofloxacin (Levaquin)

* Moxifloxacin (Avelox)

* Norfloxacin (Noroxin)

* Ofloxacin (Floxin) 

Here are two fantastic videos on Small Fiber Neuropathy from the Powerhealthtalk.com group who have many fantastic resources on FM. 

 http://powerhealthtalk.com/fibromyalgia-its-a-nerve-disorder.htm

http://powerhealthtalk.com/small-fiber-peripheral-neuropathy-gabapentin-lyrica-and-cymbalta-dont-address-the-cause.htm

The best approach to treatment for SFN is to address it quickly and to find what the underlying causes are for it to stop the progression and further degeneration of nerves.

Best places to start: the gut, thyroid, autoimmune disease and chronic inflammation, and neurological disease. Reduce inflammation and stimulate the nerves to help them regenerate. 

Hashimotos healthtalk on testing ranges: https://m.youtube.com/watch?v=KLzrF5ckHZA

The mayo clinics approach to different types of nerve damage: http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration



Chiropractic Neurologist in Abq:  http://www.wellness.com/find/chiropractic-neurologist/nm/albuquerque. (Micheal Pendleton was the one suggested to me) 

Possible physicians who diagnose neuropathy: http://www.lifescript.com/doctor-directory/condition/n-neuropathy-nm-albuquerque.aspx


I hope that is a helpful introduction to Small Fiber Neuropathy. Please consider doing a bit more research as that was just barely scratching the surface of SFN's relationship to Fibromyalgia. If you have any questions feel free to email and I'll do my best to help.